My Care My Right – Recognising the role of volunteers

On Saturday 12 October, people across the world will be celebrating and supporting hospice and palliative care.

Ros Scott and Leena Pelttari, Co-chairs of the European Association for Palliative Care (EAPC) Task Force on Volunteering, tell us more about this year’s theme and the role of volunteers in supporting people to demand “My Care My Right”.

Ros Scott and Leena Pelttari, Co-chairs of the EAPC Task Force on Volunteering.

As World Hospice and Palliative Care Day 2019 approaches we have been reflecting on the role of volunteers in supporting people’s right to palliative care within Universal Health Coverage (UHC). The theme of this year’s World Hospice and Palliative Care Day focuses on the importance of palliative care as a human right and on the empowerment of people with palliative and end-of-life care (PEOLC) needs and their carers to enable them to demand such care within UHC. The theme also recognises the importance of mobilising volunteers in local communities to ensure that for every patient there is a supportive community of caregivers and volunteers enabling their social care needs to be met.

So what is the role of volunteers in this context?

Before exploring the answers to this question it is important to stress that volunteers should never replace paid staff but are an important community resource working alongside patients, carers and the paid staff team. Palliative care is a partnership of patients, medical and other care specialists and volunteers, each dependent on the other for truly holistic care.

We know that historically volunteers have been powerful advocates for palliative care; having campaigned for and established a high number of palliative care services in many countries throughout the world. This advocacy continues today as volunteers raise awareness of palliative care, educating the public and helping to reduce taboos around death and dying. Volunteers develop unique relationships with patients and families, providing practical, social, emotional, spiritual and bereavement support. In “being there”, volunteers focus on the human connection, sensing what they can provide to the person with PEOLC needs and their carers, by responding to their special needs at this special moment in time (EAPC Madrid Charter on Volunteering).

Volunteers bring a community dimension to medical and nursing care, often helping people with PEOLC needs to access much-needed care, especially ‘hard to reach groups’. Paleri and Sallnow (2018) in discussing the challenges in providing “accessible and affordable” palliative care at a population level in India, suggest that “in areas where the community, through the volunteers, has shown strong presence in palliative care, the coverage has improved tremendously” (p, 158). Kiyange (2018) also indicates that in Africa volunteers are “indispensible and integral to government health systems in providing human caring, health awareness, enhanced adherence to critical medicinal dosages…” (p,145)

When resources are scarce and the need for palliative care high, communities and volunteers also play an important role in contributing to the sustainability of palliative care services through administrative roles and raising much-needed funds.

So as this year’s World Hospice and Palliative Care Day approaches, let us take a moment to reflect upon and recognise volunteers and their contribution to palliative care and Universal Health Coverage and in supporting people to demand “My Care My Right”.

References

EAPC “Voice of Volunteering” EAPC Madrid Charter on Volunteering (2018) Accessed from http://bit.ly/EAPCVolunteeringCharter

Kiyange, F. (2018) Volunteering in Hospice and Palliative Care in Africa inScott, R, and Howlett, S. The Changing Face of Volunteering in Hospice and Palliative Care: An international perspective. (pp 142-156)Oxford: Oxford University Press

Paleri, A., Sallnow, L. (2018) Volunteering in Hospice and Palliative Care in India inScott, R, and Howlett, S. The Changing Face of Volunteering in Hospice and Palliative Care: An international perspective. (pp 157-169)Oxford: Oxford University Press

Links

• Find out more about World Hospice and Palliative Care Day and register your event.
• Follow@worldhospiceday on Twitter
• Follow hashtags:#mycaremyright and #whpcd19

Please sign the Voice of Volunteering – EAPC Madrid Charter on Volunteering in Hospice and Palliative Care.
And find out more about the EAPC Task Force on Volunteering here. 

Read more posts about Volunteering in Palliative Care in our new series on the EAPC blog.